The TSC Alliance is an internationally recognized nonprofit that does everything it takes to improve the lives of people with TSC.
We drive research, improve quality care and access and advocate for all affected by the disease. The TSC community is our strongest ally. The collaboration of individuals and families, along with the partnership of other organizations, fuels our work to ensure people navigating TSC have support—and hope—every step of the way.
- Our work wouldn’t be possible without the commitment of our community. Advancing research requires dedicated investigators, individuals with TSC, government and industry. Improving quality of and access to care demands healthcare professionals and dedicated volunteers. Raising awareness takes the work of families, individuals and volunteers.
- We use a comprehensive approach to improve quality of life for people with TSC—fueling promising research while making sure that, day-to-day, individuals are diagnosed early and receive the highest quality care available. We also have a voice in policy around healthcare access and federal funding for TSC research.
Research
We ensure TSC researchers have the data and funds they need to discover breakthroughs.
- We fund investigators working on TSC-related studies. Often, we support focused research projects that allow researchers to develop preliminary data that will lead to additional funding from larger organizations. We also invest in early-career researchers to encourage their interest in TSC. This approach sustains their work long term and maintains momentum by fostering a diverse group of researchers dedicated to our shared mission.
- We ensure TSC researchers have the data and connections they need to make progress. Our Natural History Database helps us accomplish this objective. It collects clinical information from people with TSC and connects to our Biosample Repository. Researchers use this vast collection of data to answer questions and find patterns in the course of the disease over a lifespan and its variability person to person.
- The TSC Alliance organizes conferences and publishes a research-focused e-newsletter to facilitate connections between investigators, academic institutions and other nonprofit partners. The more they share and learn from one other, the closer our community will be to breakthroughs.
- The TSC Alliance fuels collaborative research through our Preclinical Consortium, bringing together industry and academia. We make preclinical testing resources available to de-risk drug development in TSC and move new treatments to clinical trials faster.
- We streamline the clinical trial process to bring more TSC treatments to market. By working with researchers from TSC Clinics and our community of individuals and families, we help academic and industry researchers implement trials more quickly and effectively and ensure more people with TSC have access to trials that suit their unique journeys.
Care quality and access
We improve access to high-quality care for people with TSC.
- The TSC Alliance recognizes a network of TSC Clinics around the country and the world where individuals and families can find comprehensive care. Some clinics qualify as TSC Centers of Excellence for their outstanding clinical care for both children and adults, educational resources, community partnerships and research initiatives.
- Working with and supporting teams of TSC experts around the world, we play a vital role in defining what constitutes quality care. We identify and share best practices for diagnosis, surveillance and treatment with TSC Clinics and other healthcare providers so they can use them within their communities and ensure people with TSC get the best care possible.
- No one is alone on their TSC journey with the TSC Alliance. We’re a central hub for information about TSC care and treatment, offering resources and support for individuals, families, healthcare professionals and educators to ensure quality care from diagnosis onward.
- We work to ensure school systems understand and adapt to the learning needs of students with TSC. Our Educator Mentor Program provides one-on-one support to any professional working in education—from pre-K to college—so they can recognize how TSC affects learning and create great educational experiences for their students. We also provide expert guidance on developing Individualized Education Programs (IEPs) and many other resources to help families navigate special education programs.
- We’re developing an easy-to-use online TSC Navigator tool to help guide individuals and families through the complexities of TSC across the lifespan, proactively manage their care and live their fullest lives.
- We support adults living with TSC in a variety of ways, from offering support to them and their families as they transition from pediatric to adult care to sharing resources to help further their post-high school education. We also offer educational programs, resources and open forums for independent adults with TSC as well as for caregivers of dependent or semi-dependent adults
- We’re expanding access to quality care for individuals and families who don’t live near TSC experts by encouraging the use of telemedicine and by calling on our Professional Advisory Board to support local clinicians who aren’t as familiar with the disease.
Community empowerment and advocacy
The TSC Alliance advocates with and on behalf of our community to ensure everyone living with TSC has what they need to live their fullest lives.
- We advocate for state and federal funding of TSC research and clinical care—and give the TSC community the tools to do the same. Our voices are a powerful force for accelerating discoveries.
- We amplify the voices of the TSC community to make sure their lived experiences play an important role in prioritizing research and ensuring new treatments.
- The more people know about TSC, the faster it can be diagnosed and treated. Through campaigns, advocacy and our powerful community of individuals and families, we raise awareness of the disease among healthcare professionals, nonprofits, government partners and the public at large.
- Our nationwide network of Community Volunteers supports individuals and families affected by TSC at the local level. Every branch is run by caring and welcoming volunteers—parents, grandparents, adults and friends—who host educational meetings, raise awareness and fundraise, foster local connections and serve as a resource in their communities.
- Our network of Global Alliances support TSC communities around the world. Dedicated volunteers work at every Global Alliance, and we partner with them to create and implement plans to help better meet the needs of people navigating TSC outside of the United States.